2Leadership

Educa4on in Neurodevelopmental and related Disabili4es (LEND) Program 3Vanderbilt University Department of Speech & Hearing Sciences The Division of Developmental and Behavioral Pediatrics Department of Hearing & Speech Sciences Cincinna4 Children's Hospital Medical Center The University of Cincinna4 University Center for Excellence in Developmental Disabili4es

1Arizona State University

1,2,3, Jus4n Rozniak BA CCLS2, Rebecca Walterman BA2, Susan Wiley MD2 Samantha Gustafson AuD

Family Perspec4ves on Au4sm Spectrum Disorder and Hearing Loss

There is a signicant lack of evidence guiding the diagnosis and interven2on for children with a dual diagnosis of permanent hearing loss (PHL) and au2sm spectrum disorder (ASD). The prevalence reports of ASD among children with PHL have ranged from 3 to 13%. The needs of children and families with both PHL and ASD are minimally described and mainly rely on small case reports.

Introduc4on/Background

To gain an understanding of the experience of families with children who have PHL with a co-exis2ng ASD. A focus group held at Cincinna2 Childrens Hospital Medical Center lasted approximately 2 hours and was facilitated by a moderator from the Ohio Center for Au2sm & Low Incidence. Ques2ons Discussed: 1)Tell us about your experiences as you received your childs diagnosis of au2sm spectrum disorder. 2)How has the diagnosis of an au2sm spectrum paired with hearing loss impacted your family? 3)What resources/supports have you found helpful? Where did you learn about these resources (professionals, website, other people, etc.)? 4)In thinking about your child with hearing loss and an au2sm spectrum disorder, what is on your wish-list? 5)What items on your wish-list are most important to you?

Objec4ve/Design

The child with unilateral hearing loss (Child 1) experienced late access to educa2onal services, as his hearing loss did not qualify him for educa2onal supports. His family recognized dierences in his communica2on and social interac2on and therefore, pursued further developmental evalua2ons in order to access school supports. The other two children experienced varied educa2onal sepngs based on their developmental paJern. The child with a gene2c syndrome (Child 3) had signicant motor delays early on and par2cipated in a classroom sepng for children with motor disorders. This sepng helped with motor development, but broader communica2on and learning needs were later recognized, promp2ng a change to the public school programming op2ons. Within the public school system, Child 3 moved from an integrated preschool classroom to a more restric2ve sepng for children with developmental concerns and nally to an ASD-specic classroom. Once Child 3 accessed the ASD-specic sepng, the family noted that the ASD classroom made the biggest impact on language. The child with bilateral cochlear implants (Child 2) also experienced changing educa2onal sepngs. Ini2ally enrolled in a program for children with apraxia of speech using sign language as the language support, Child 2 shiqed to a public educa2onal system due to challenges in eec2vely managing behavioral concerns. He is now in a social-communica2on classroom and has seen progress in his language and social communica2on.

Par4cipants

Table 2. Characteris4c
Age of HL iden2ca2on Type of Amplica2on Au2sm spectrum label Age of Iden2ca2on of ASD Current Educa2onal Placement

Child 1
3 years Hearing Aid PDD NOS 6 years Mainstream sepng with IEP supports

Child 2
2 months by UNHS Bilateral CI Au2sm 4 years Social Communica2on Classroom

Child 3
Profound bilateral Birth due to Syndrome Unilateral CI, no longer using PDD NOS 6 years Au2sm Classroom

Type and Degree of HL Unilateral mild to moderate Profound bilateral

Parents shared struggles with balancing the priority of their childs development of social skills and academic performance, repor2ng more interest in the development of their childs social and func2onal skills rather than his/her academic performance.

Func4onal Skill Development

Early Educa2onal Placements

Special Needs Preschool

Home-based EI Home-based EI Classroom for children with motor disabili2es School for the Deaf with manual approach in Special Needs Preschool apraxia program Developmental Disabili2es Classroom Total Communica2on: wri2ng, signing, spoken language Visual Schedules PECS Signing Visual Schedules PECS Dynavox

To access support for social skill development for their child, parents expressed the desire for accessible social groups based on geographic loca2on and scheduling convenience within their already-busy schedules. Two families noted the need for more peer-models in social groups.

At some point, Im going to look at him and say, it doesnt maber to me you know your mul4plica4on table, I cant take you anywhere. I cant take you to the grocery store.

Communica2on Mode Aural/Oral Au2sm specic strategies used

Visual Schedules Social Stories

UNHS Universal Newborn Hearing Screening CI: Cochlear Implant PECS: Picture Exchange Communica#on System PDD NOS: Pervasive Developmental Disorder, Not Otherwise Specied EI: Early Interven#on IEP: Individualized Educa#on Plan

The group discussion was audiotaped and transcribed verba2m by the rst three authors. The rst author systema2cally coded the transcript into themes and sub-themes. These themes were veried by other authors and are reported in Table 1. Of the 5 parent par2cipants from 3 families, 2 were fathers. Children varied in degree of hearing loss and in ranges of severity of ASD (See Table 2).
Table 1.

Themes
Diagnos2c Experiences Family Impact Func2onal Skill Development Academic Considera2ons Miscellaneous

Sub-themes
Developmentally inappropriate tes2ng Highly emo2onal experience On-going process Extent of disclosure Func2onal skills are a priority Access to social groups Reloca2ng for services Limita2ons of Extended School Year BeJer training of professionals in both ASD & PHL Internet has been helpful

Throughout the diagnos2c experience, all families felt that their child was asked to perform tasks that were more advanced than the childs abili2es. Addi2onally, families noted that strategies that evaluators used to try to engage or mo2vate par2cipa2on were ineec2ve. Parents expressed that if they had been more involved in the evalua2on process, they could have coached evaluators in the use of more eec2ve strategies. One family noted that the use of an interpreter during the evalua2on process was not helpful, as their child had not ever been in sepngs where an interpreter was needed or used. Furthermore, one family felt the developmental tes2ng that was used was not appropriate due to the childs hearing loss. Because of these issues, the family did not feel that the evalua2on was an accurate representa2on of the child. Although the diagnosis of ASD was reported as being emo2onal for some families, one family also recalled that their child receiving the diagnosis of ASD was valida2ng and freeing. [We] kind of already knew it[and] looked forward to
what doors would be opened in the future as we pinpointed something.

Diagnos4c Experience

Two families discussed the reac2ons that grandparents had to the childs diagnosis, no2ng that grandparents were ini2ally in denial upon hearing about each diagnosis. For another family, grandparents reportedly wondered if they should treat this child dierently from other grandchildren. Overall, it was noted that working with grandparents is an on-going process. Because Child 1 has rela2vely mild symptoms of ASD, his family reported the con2nuous issue of disclosure to extended family and community. They have chosen not to share his ASD diagnosis with those who dont con2nuously interact with him. This family also discussed disclosure to a cousin who is close in age to Child 1, as the cousin has begun to ask ques2ons about why Child 1 is treated dierently.

Family Impact

The Internet was reported as a good resource to connect with other parents due to the low prevalence of children with both PHL and ASD. This was reported as a mechanism for informa2on as well as family-to-family networking via chat-rooms and social networking groups. Parents expressed a need for someone that they can call/email with ques2ons. They noted that this person should have a knowledge base of both PHL and ASD and should be able to oer an understanding of the familys needs. In addi2on to communica2on between the school and the family, the medical provider was men2oned as an integral part in fostering progress towards the acquisi2on of appropriate services, even before a diagnosis. Two families expressed desire to be included in treatments so they can beJer maintain consistency between school, therapy, and home.

Miscellaneous

The impact of having a child with au4sm has on the family is on-going and constantly evolving. There are some wonderful things because it makes the people in the family rally to supportmade them more compassionate. Its brought us closer to our rela4ves. But its a stressor too.

Overall, parents were happy with services that were provided in school, but were concerned about the poten2al of cuts in funding. One parent also noted that her son is a successful Total Communicator, requiring an ASL interpreter. She is concerned that, because he has good access to sound with his cochlear implants, it may be determined that he doesnt need sign language. Two families have considered moving to dierent states for schools with beJer services. Parents were dissa2sed with the limita2ons of the Extended School Year program, no2ng the need for more thorough con2nua2on of the academic school years structure on a year-round basis, par2cularly related to their childs dicul2es with changing schedules and reliance on structured teaching. Two families noted apprecia2ng daily communica2on from the teacher, explaining that this helped foster consistency between school and home for her child. Parents stated that many professionals working with their child provided good informa2on and had a sa2sfactory knowledge base for one diagnosis or the other; however, they expressed a need for beJer training to ensure that professionals working with their children are procient in both PHL and ASD.

Academic Considera4ons

Overall, par2cipants had varying diagnos2c experiences, noted the mul2dimensional impact on the family, iden2ed the internet as a useful resource, func2onal skill development as a priority, and the structure provided by school as helpful. Improving educa2on of and collabora2on between professionals working with children with ASD and HL was discussed during this parent focus group. This collabora2on and interdisciplinary educa2on may alleviate the need for parents to seek out informa2on independently via the internet and may help the family maintain a consistent structure and rou2ne as their child transi2ons from school, to therapy, and to the home. The topic of improving the knowledge of members of the medical and educa2on team was noted by parents and was discussed at length during a subsequent focus group held with professionals working with children with PHL and ASD (see poster #311). This overlap emphasizes this topics signicance as further ac2on is taken to improve the management of children with PHL and ASD. Future research should include perspec2ves from families of varying backgrounds and from areas outside major ci2es.

Discussion

1. Roper, L., Arnold, P., & Monteiro, B. (2003). Co-occurrence of au2sm and deafness: Diagnos2c considera2ons. Au#sm, 7, 245-253. 2. Bradley, L. A., Krakowski, B., & Thiessen, A. (2008) With liJle research out there its a maJer of learning what works in teaching students with deafness and au2sm. Odessey, 9(1), 16-18. 3. Hitoglou, M., Ververi, A., Antoniadis, A., & Zafeiriou, D. (2010). Childhood Au2sm and Auditory System Abnormali2es. Pediatric Neurology, 42, 309-314. 4. Steinberg, A. G. (2008). Understanding the need for language. Odessey, 9(1), 6-9. 5. Szymanski, C. A., Brice, P. J., Lam, K. H., & HoJo, S. A. (2012). Deaf Children with Au2sm Spectrum Disorders. J Au2sm Dev Disord. Jan 31. [Epub ahead of print]

References